Adolescent and Young Adult Survivorship: What We Still Need to Understand

San Diego, CA—As a result of differences in biology, access to care, and psychosocial and socioeconomic circumstances, adolescent and young adult (AYA) patients with cancer face distinct challenges compared with their adult counterparts. At the 2017 Cancer Survivorship Symposium, Emily S. Tonorezos, MD, MPH, General Internist, Memorial Sloan Kettering Cancer Center’s Adult Long-Term Follow-Up Program, New York, NY, and Assistant Professor of Medicine, Weill Cornell Medical College, New York, discussed gaps in research and treatment in this vulnerable population while proposing solutions to improve AYA survivorship care.

According to Dr Tonorezos, failure to improve survival in the AYA population may be related to low participation in clinical trials.

“Patients in this age group aren’t getting on clinical trials, and we are seeing a real impact in terms of outcome,” she reported.

It is not just survival outcomes that are affected. Whether for lack of awareness, access, or acceptance, the AYA gap jeopardizes potentially beneficial investigational therapies and hinders survivorship research.

“If patients aren’t in a clinical trial or being followed by their oncologist over time, then we don’t have access to their data when it comes to survivorship questions,” said Dr Tonorezos, who noted that enrolling patients in a therapeutic trial leads to significantly better long-term follow-up.

“Getting a patient enrolled in a clinical trial is not just about treating the cancer. It’s also about keeping them engaged so they can be watched for late effects and contribute to late-effects research,” she added.

Toxicities in AYA Patients
with Cancer

Differences in AYA outcomes may also relate to poorer tolerance of treatment. As Dr Tonorezos reported, several studies have shown that young children tolerate treatment better than patients in their teens or young adult years. In a secondary analysis of rhabdomyosarcoma and Wilms trials, AYA patients had more vincristine-induced peripheral neuropathy than younger patients.

“If you’re developing treatment-limiting peripheral neuropathy, your vincristine is held or the dose is reduced. That’s what happens to AYA patients who are more heavily affected by toxicity,” said Dr Tonorezos.

In addition, separate studies have shown that osteonecrosis, mucositis, hyperglycemia, and hyperbilirubinemia were all more common among AYA patients than younger children during treatment.

“Female patients going through puberty are at especially high risk for osteonecrosis. That’s a known toxicity where you can identify a high-risk group because of this age of development,” said Dr Tonorezos.

Transition to Survivorship Care

Transition to survivorship care is another major concern as many AYA survivors fail to receive adequate risk-based care.

“Adherence to recommended second cancer and cardiac testing has been low. A survey of Children’s Oncology Group institutions revealed that half of respondents had no mechanism for transition of care from pediatric to adult-focused providers and facilities,” said Dr Tonorezos.

Although some AYA survivors receive long-term follow-up care—either from an oncologist, a primary care physician, or a specialized survivor clinic—many do not. According to Dr Tonorezos, lack of survivor-focused, risk-based preventive care is associated with concerns about medical cost and health insurance status, but minorities, and, in particular, males, are unlikely to receive routine preventive care.

“Calling this a vulnerable population is just the beginning,” she said.

A Call to Action

In addition to furthering AYA enrollment in clinical trials, providers should identify toxicities with a higher burden among AYA patients and develop strategies to mitigate them, said Dr Tonorezos.

“The goal is to continue to treat the patient with high-intensity treatment and support them through the care that they need,” she explained.

The biggest change needed, however, may be a shift in perspective.

“Oncology is a disease-based specialty. We need to take AYA away from a topic that is age-based and start thinking about the individual diseases found in this population. If we can bring together experts of specific cancers, no matter what age group they’re used to treating, we can accomplish good, disease-based analyses,” said Dr Tonorezos.

“Supporting the STAR [Childhood Cancer Survivorship, Treatment, Access, and Research] Act is a very important part of this work. This legislation will make a huge impact in what we can do for survivorship research,” she added.

“There needs to be more conversation between adult oncologists and pediatric oncologists with regards to enrollment on clinical trials,” she said.

Dr Tonorezos suggested developing prospective survivorship trials that do not rely on recall of toxicities while improving existing guidelines.

“Keeping in mind that AYAs are more susceptible to some toxicities, we should generate follow-up guidelines for survivors of AYA cancer or improve the existing ones, and we should start testing interventions in AYA, including psychosocial, medical, occupational, and educational interventions,” she said.

“Finally, providers must try to meet AYA survivors where they are. If that’s social media, that’s what we should be doing,” Dr Tonorezos concluded.